Yup... That about summarizes the past few days. Today we add in a fussy girl on top of it.
Yesterday Jillian and I had a good day together. We went for our first run of the year and played at the park. I love jilli and mommy days! I also made 3 tubie friends yesterday. Two were mailed out and one is going to be a gift to Children's to show then how awesome tubie friends are. If you know a kid that would love a stuffed animal with medical devices just like theirs let me know (feeding tubes, tracheas, ports, oxygen, ect).
Saturday my mommy treated me to something I have wanted to do since I was pregnant but did not have the time or money... A perm. I had one in high school and loved it since I have stick straight thin hair. I am loving it! I makes taking care of my hair easier. Thank you mommy!
Friday I went to a doc appointment for me. If anyone knows a good adult ENT in this area I would love to hear about it. I have a continual bulging ear drum and an issue with my swallow. It's funny. I rush to make appointments for her however for me I put it off...
Friday we also went to see my cousin jake up at children's. Jilli just looked at him like "why are you in the bed?"
Jillian has started to give her QVAR to her stuffed animals before she goes to bed. It is adorable. Only problem is that she wants to only give it to her dolls and animals and not take it herself... Sorry little miss... The point is you need it!
I got the seal around my window fixed on Friday. It was good to get that done! The silly little things of life :)
I have been looking at bed options for Jilli as she will one day get too big for her bed. Currently she is not growing much but someday she will (although she is looking older to me). We LOVE her bed but we need to start thinking now about a plan for when she is bigger.
We got two letters in the mail yesterday. First one was her tshirt and info welcoming her into the Children's Campions club. It's a club at children's for kids who spend a lot of time there like jilli. The second letter informed us that Jillian has been approved for two different programs that offer respit care and funds to help pay for things like a special bed for jilli. Both programs appear to currently have a wait list however she has been deemed eligible to go on the wait list. We are still waiting to hear back on if she was approved for state insurance for kids with medical needs although we are hoping that since she was approved for thoses other two programs that she would get the insurance too. That would help so much. I hate using state funds but it would really help jilli so it is worth swallowing my pride.
I finished getting our bags packed on Monday for our upcoming trip to children's this Thursday and Friday. She is going to have a second ph probe place Thursday morning into Friday. Friday they are doing a throat motility test. We are hoping these tests come back to show all the reflux we are seeing right now. Hopefully they show the exact same info as the last test so we can prove the results and can move to finding an underlying condition. A part of me kinda wants them to come back the exact same to show them the last test really was right just like we thought :)
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